The Price of Hope: Spotting Profit Over Patients
The Price of Hope: Stop Abusing the Funds
Hope is something people exploit. And I have had enough of it. Its shocking and I’m telling you to do your homework. People are exploiting rare and ultra rare disease everyday.
I learned a lot from another rare mom, very early on in advocacy about greed. She told me that 20 over time, her foundation lost its way. The professional CEO walked away with a fat paycheck while less than three percent of the money actually reached patients. Three percent. You have got to be kidding me. I have heard the same story over and over again across other groups as they grew… they got further away from patients, further from their mission.
I come from a small mom and pop style of advocacy where no one gets paid. We hustled, we worked, and every penny is weighted in patient outcomes. So when I look at these glossy foundations with millions flowing in and fancy suits at the top, while families go without, I cannot stay quiet. It is ridiculous.
Stop Selling Me Hope Like It’s a Product
Too often, families are asked to donate, purchase, or fundraise without ever being shown where the money goes. Even at the grocery store…round up for the poor sick kid. All I can think about is my own sick kid. Yes, I’m bitter.
Because behind the slick campaigns, staged galas, and shiny slogans about “progress,” the truth is ugly: some platforms profit more than they serve.
Every day I get another sales pitch dressed up as rare disease advocacy or solutions. Let’s be clear, I’m grittier than your 50-person team put together, and I do this work for free. If you can’t match that… I’m out.
Maybe it’s because my daughter is rare. Maybe it’s because I’m a nurse. But here’s the difference: I don’t see rare disease as a revenue stream. I see human beings.
Every person with a rare disease is sacred. If your platform forgets that, if it chooses profit over patients, then it’s not advocacy..it’s exploitation. And please don’t stay quiet about it.
I stopped going to meetings where people “pitch me” “sell me” the miracle product or the next great platform to solve rare disease issues. I always ask price up front and if they cant answer.. I can not weigh in. The most basic question- how much? wow, it stops people and they scramble. They avoid it and go back to the selling point. Again HOW MUCH? One guy even told me I was wasting his time. That was a turning point for me. You came to sell me something in the name of patients, and I am supposed to just hand you money and clap? No.
Ultra rare is self supporting and that is weighted 100 fold. What we spend money on has to have solid outcomes and timelines.
Common Sense Check
This is not complicated. If you claim to serve rare families, then most of the money better actually reach rare families. Not CEOs, not consultants, not expensive galas. Patients.
If less than half your budget goes to programs, red flag.
If your CEO makes more than doctors in the trenches, red flag.
If you cannot hand me your Form 990 or a clear breakdown of where the money went, big red flag.
Families are already crushed under costs. So no, we do not have extra cash lying around to feed someone’s ego. We fund treatments and outreach with 5ks and bake sales.
Hope as a Commodity
In rare disease spaces, advocacy groups, foundations, and platforms hold extraordinary influence and with that great responsibility. They present themselves as lifelines, funding research, supporting families, educating doctors. Many do this work with integrity. But others leverage hope as a commodity, raising millions without proving measurable impact. Or the money is coming in with a catch. They have relied on private funding for so long, without it they would calapse, so then who controls the narrative.
If advocacy organizations or platforms are not stewarding money wisely, they are not neutral—they are harming families who cannot afford more loss.
Humanitarian vs. Business Models
We are trained to think of “nonprofit” as good and “for-profit” as bad. But in reality, the line is far blurrier.
A nonprofit foundation can raise millions yet funnel the majority into administrative costs, fundraising, or CEO salaries. Without transparency, “nonprofit” becomes a shield, not a guarantee of humanitarian values. This is why looking at their taxes is key.
A for-profit company can sometimes deliver more value if its product or service is clear, tested, and priced in alignment with the benefit it provides. If a therapy works, if a diagnostic test saves lives, if a platform genuinely connects patients with care profit and humanitarian impact can coexist.
The model that families should look for is the mission-driven model: at least 50% (ideally 70%+) of funds directly support patients, research, or services. That’s the difference between humanitarian intent and business exploitation.
Reading the Receipts: How to Decode a Form 990
The simplest tool for accountability is already in the public domain: the IRS Form 990. Every U.S. nonprofit is required to file it. Think of it as a financial report card open to anyone willing to look.
Here’s what families should check(this is what I check before I even have a meeting with a non-profit)
Revenue and Expenses (Page 1) – What percentage is spent on programs vs. overhead? Strong nonprofits usually put 70%+ into programs.
Executive Compensation (Part VII) – What are leaders paid? Pay must align with budget and outcomes, not outweigh them.
Functional Expenses (Part IX) – Check the balance between program services, fundraising, and administration.
Grants and Assistance (Schedule I) – Is money actually reaching labs, clinics, or families?
Fundraising Costs (Schedule G) – Did a gala that raised $1 million actually cost $600,000 to throw? That’s a poor return on patient dollars.
These documents are available on ProPublica Nonprofit Explorer or GuideStar (Candid). Reviewing one takes ten minutes and can reveal whether an organization’s humanitarian claims match its balance sheet.
The Hidden Cost of False Hope
Every dollar that goes to glossy marketing instead of science has a real consequence. It’s not just financial waste it’s time lost.
Time without treatment.
Time of irreversible organ damage.
Time of childhood milestones missed.
False hope is expensive. Families donate, believing their money funds the next breakthrough, only to discover later that the funds sustained the organization more than the mission. This cycle breeds disillusionment. It erodes trust. And once trust is gone, it’s almost impossible to rebuild.
Trust is the rarest currency in the rare disease community. Without it, families stop engaging. Researchers lose trial participants. Policymakers stop listening. Everyone pays the price.
The Rare Disease Accountability Contract
To protect families, here’s a simple contract framework—call it a checklist for trust.
Mission-Driven Standards:
At least ___% of funds go directly to patient programs, research, or services.
Leadership pay is ___ in proportion to the total budget and outcomes delivered.
Annual Form 990s and outcome reports are made public.
Promises are matched with deliverables: publications, FDA submissions, patient support.
Red Flags:
Less than half of funds reach patients.
High fundraising or marketing costs with minimal outcomes.
Executive pay disproportionate to mission impact.
Vague or missing public financials.
Families can fill in the blanks with their own thresholds. But the principle remains: every dollar should be accountable.
The Price of Hope
Hope is sacred in the rare disease community. It carries families through hospital hallways, insurance denials, and sleepless nights. But when money is misused, hope is not just delayed..it is betrayed.
Repeat after me: Patients First.
If money is taking that away, if it’s lining pockets instead of funding cures, if it’s building brands instead of building treatments, then it is not advocacy, it is exploitation. And we will not stand for it.
Because hope is not a business model. Hope is the lifeline of every patient still waiting. And until every dollar serves that truth, the rare disease community will keep fighting for nothing less than Patients First. Always.
#RareDiseaseResearch #Transparency #Accountability #PatientsFirst
